PCU, Day #31, More Progress

Another good day.  I love the fact that these past three days have been wonderful in terms of Hannah making progress, regaining her personality, and beginning the recovery process.

Early this morning, we put my laptop next to Hannah as she laid on her side in her crib, and we turned on Wiggles on my ITunes.  She was babbling and totally interested in watching it for almost 2 hours!   The timing was great because she was just talking away when the neuro resident, the critical care resident, and the critical care fellow came to do their early morning assessment.  I was thrilled because we are starting to see more personality — we know how much she loves the Wiggles and Mickey Mouse!

Humidified trach collar trial — passed!   In the middle of her 12-hour CPAP trial today, they decided to push Hannah a little bit to see if we could get her to breathe off the vent.   So they put on a special mask that went over her trach that delivered just a little bit of oxygen (equivalent to 2 liters) that was humidified.   We had a bit of a scare about 30 minutes into it because her sats started falling into the upper 80s and lower 90s, but we quickly learned (thanks to the respiratory therapist) that Hannah just needed suctioning, and once we did suction her, her sats were between 99 and 100 during the entire trial, all 90 minutes worth!  Hopefully we will get a longer trial tomorrow with the humidified trach collar or maybe decrease the oxygen support (21% oxygen is equivalent to room air).

Why is this huge?  This gives us more hope that she will be able to breathe during the days without any ventilation support.   She needs to be able to do it longer, but they only stopped her because it was her first trial.  She did great.  We’ll see what tomorrow brings!

She had PT and OT today.  Thanks a combination of the “homework” her PT gave us and her movement disorder becoming less intense, Hannah’s feet and arms are much looser than a couple of days ago.  Because of her movement disorder, her muscles seemed to have gotten really right, especially around her ankles and feet.

OT gave her a tumble form chair today, and she absolutely loved sitting up!  She tried to play with this toy (looks like a big one-light traffic light) where she touched the light and it flashed and made a sound.  Unfortunately, she was not able to control her body enough to do it on her own yet, but we will keep working on it.  She was definitely interested in it.

They finally took out Hannah’s central line now.  All she has is a peripheral IV.  Now that her feeds are up to almost the level they want (she is at 32 mL/hour, and their goal is 38 mL/hour) and all of her meds go into her Gtube, we don’t need to get a PICC line.  Yay!  One less invasive procedure.

Weaning Process.  Still working on the weaning process.  Today they are cutting down the methadone to almost  nothing.  Next they are going to work on the one they are most worried about, the pentobarb.  Their tentative plan is to cut it down by 10% each day until it is done.  Then, it will be time to wean the Ativan.  (However, we can do the weaning of the Ativan in Vegas).

They are still trying to figure out her movement disorder.   We still don’t know if it is permanent or temporary, but the Klonopin seems to be helping control the severity of her movements.  Today was just a bit better than yesterday, and that is a good trend.

Best news: The transfer planner met with us again, and things are definitely in the works to medi-flight Hannah to Vegas!  Our attending is tentatively thinking “towards the end of next week.”   That could be a week from now!   Now I don’t know if the insurance is covering it now that all the “work” was done here in TCH and our new residence is in Vegas, or if she is using a charity flight she found, or if our planner just has not mentioned it to us yet that we will need to cover it.

On a side note:  Just to prove once again what a wonderful, wonderful pediatrician Dr. Bhakta is…. Ethan was running out of his ADHD meds, and for obvious reasons, we have not been able to get him to see the pediatrician we had originally planned on.  Since we had no way of getting to Dr. B’s office to pick up the prescription (and it cannot be called in), Dr. B actually came to us here at TCH to give us the prescription!   It was also a great chance for him to see how well Hannah is doing and for us to give him a goodbye hug.  I am so going to miss that man!